My LMS adventure

Yesterday was Cycle #6 with Yondelis aka Trabectadin.  I love this drug.  I know it is expensive, and new.  I live near Moffitt Cancer Center in Tampa, so the Monday and Tuesday visit every three weeks is not bad.  They've got me on OnBoard to keep my red blood cells up.  This is not the first drug for me, I've listed my previous treatments at the end of this post. Here's how my treatment goes: Monday morning, I go to Moffitt Cancer Center, report to the lab, get blood drawn, and the port accessed.  Next stop, Gyno Oncology, where I check in with the Medical Assistant (weight, Blood pressure, pulse, temperature,)  Then I visit with an advance practice nurse, who reviews medications, allergies, current complaints, symptoms, questions for the oncologist).  Then I see the oncologist.  Questions asked and answered, next steps for treatment discussed.  Yesterday, we discussed when the next scan would be.  Ordinarily she g...

At my last visit, the oncologist said there will be good days and bad days, enjoy the good days. Here's what I'm doing to enjoy the days. There's a Vera Bradley discontinued pattern that I like. I found a bag and wallet in that pattern (Botanica) on eBay. Tuesday I walked to the North Community Center. I'm doing the paperwork to get some money for a few fun things. Okay, the plumbing work for my home, and the painting for my home isn't fun. Although I'd love to paint my bedroom today... maybe I'll wash the walls and prep for patching... one wall at a time. A neighbor has passed a trike to me, you know, a three wheel bike. Here's the best part. It's very stable; I haven't ridden a two wheeler for 30 years. When I'm riding, I can't tell it is a three wheeler. The lady who owned it was around my height. Now I have no excuse to stay home from the pool. I feel like a kid that got a bike for Christmas. Do whatever I want.... ...

Okay, CT results from last Thursday. SMALLER.... all the lesions are about half to a quarter of the size they were. The liver lesion is dead, and slowly being carted off by my body's trash system. The spinal vertebra shows no growth; the adrenal is smaller (first time!!) and the lung lesions are shrinking. SMALLER. Other good things? I found the clothes basket with the missing underwear which now doesn't fit because of my 40 pound weight loss. No, I wouldn't recommend this diet. Another good thing? I had the energy to look for and find the laundry basket. -- I've got my appetite (and hair) back with this maintenance treatment of Yondelis. Ah, I'm pulling out the tape measure, and then ordering my fav underwear from Hanes.com. Heck, I may even order some yoga pants since all I have are black.....and too big (fortunately they have drawstrings....so they fit any weight.)

Two years past diagnosis and initial treatment. Third round of Yondelis finished yesterday. Feeling good. I was able to feel the large liver tumor, there's little there (including no pain). I've got a CT scheduled to find out if the liver tumor is going/going/gone. I've been very weak. Recently my resting heart rate, after walking a few feet, was 129. Not good. I need to move around, so I keep healthy. I've been walking with a cane, walker and (at the hospital) wheelchair. Nesting: I've been nesting.. curling onto the couch, playing on the computer, knitting, sleeping, watching TV, eating and drinking. This has been BAD for me. SO I'm now standing up on a regular basis.... I am at least staying awake during the day.... so I am sleeping through the night. I'm realizing that eating is huge. When I eat breakfast, I can move through the day... My reserves are down that far. I've lost a total of 45 pounds in two years. Twice I've los...

Last week was interesting. I had been in severe back pain for several months. I got a PET/CT scan, and sneaked a peak at the results. Back pain was due to new mass on vertebrae. I had worked with pain management and started taking Gabapentin/Neurontin, but started stumbling and falling. I fell completely to the floor three times, and started using a cane. Last Monday, I went to see my oncologist to get the results. On the way into the hospital, I asked for a wheelchair...I realized I couldn't do the long halls and stay on my feet. After talking to me, hearing about the falls, and watching me walk, my oncologist pulled a neurologist into the room. They convinced me to be admitted. Their concern was the falls, which could cause damage to my spinal cord. I had lost about an inch of height due to the compression of my vertebrae. The report from the scan: Liver tumor is significantly smaller, lung lesions are larger. No evidence of tumors in neck at lymph system. There's a s...

The waiting is over. Yesterday the nurse called with the results. The Liver mass is LMS and an appointment was scheduled. That's where I'm sitting now. I'm knitting, to relax and to pass the time. Soon I'll know. I'll call Mom, my daughter, my friends, my roommate. I hope this will be a short appointment. The kidney/back pain needs an RX or permission for me to keep taking Advil (or generic). The next step for treatment is Chemo. Doxyrubicin aka the Red Devil. I can only have 6 doses in a lifetime. First step is a cardiac ultrasound to measure Left Ventricle Ejection Fraction. (That is, how efficiently my heart is moving blood out of the Left Ventricle.) One side effect of this medication is sudden death due to heart attack, due to damage to the left ventricle. So they want a health LV to start, or (I suppose) they would find another treatment option. (10/13/2016 I wrote this while waiting for the oncologist appointment. Just found this in a noteb...

Lately, my abdomen feels odd.... Now realize, I'm a 55 year old woman, I carried a child to full term. I've carried an extra 40 pounds for most of my adult life. I know what fat feels like... when I touch my stomach, the fat feels.... like dead meat. There's no feeling there. Tomorrow is the needle biopsy of my liver, so I went to the website to re-read the instructions. As long as I was on the website, I figured I'd re-read the latest office visit note. That's where I read, " Large heterogeneous necrotic and enhancing mass in the R hepatic lobe (8 x 8 x 6cm), increased since prior CT but present on recent PET/CT." I should have paid better attention to metrics. My yard stick is old... errr.. antique --- no metric measurements. So I google it. (of course). Eight cm equals inches. Okay, not a great search... got some answers for how many cms in 8 inches. And then I found the answer. Slightly over three inches. wait. Three inches. That ...

At this point, only my roommate, my mother and one friend know what I'm going to tell you. First let me apologize to all my friends for not telling you personally. I just can't do it. This disease spreads. It is rare and aggressive. I'll be fighting this for the rest of my life, whether I'm in active treatment or not. We've known there will be recurrences. The November surgery was due to a PET scan that showed a mass which turned out to be benign. Two days ago, I went for a CT/PET scan. Yesterday I got the results. There are new lung lesions/nodules. Something is happening with the liver (previously it was identified as scar tissue, now it is active). There are suspicious spots in my intestines, but with the healing (at least it shows on the PET scan, it doesn't seem to be getting smaller). There's activity within a neck lymph node, which (like the others) was there in October, and is now larger/more active. Several months ago, my oncologis...

One advantage of where I live is the many activities. Three days a week, there is an 8:00 walking class... which follows a video and walks (in place in an air-conditioned room) three miles. I've got a fitbit, which helps remind me that I need to move more. Some days, I walk so little that the most I walked in 15 minutes was under 100 steps. Meanwhile, I called the Moffitt today about the non-healing wound. It's been three weeks, it doesn't seem to be making progress. I've got an appointment with the nurse practitioner on Monday. After hitting several drug stores, I found the gauze that I need for the wet-to-dry dressing, and got more tape. I like this tape, not as sticky, so it (hopefully) will be easier on my skin. I'm writing this blog for myself, as well as others who have uLMS (or LMS in general). I want to remember the challenges, how it was. It's getting better. Tomorrow I'm doing Qi Gong. With the new year, I'm making some minor c...

In 2014, I had surgery on December 23rd. I was discharged from the hospital on Christmas Day. The following Monday I got a call from my surgeon. She kept apologizing, and told me the pathology report showed Uterine Leiomyosarcoma. I had a flashback to medical terminology... Leio- smooth, Myo- muscle, sarcoma - Cancer. Later after some Internet research I realized why she was apologizing. "Rare and aggressive" were the two terms used to describe this. I dug until I found statistics... how long will I live? I reached out to others with this disease. ---Even found a few who were diagnosed at the same month I was. My surgeon had done a residency with a gynecology oncologist, Dr. Chon. She had made phone calls to Dr. Chon, and gave me the phone number to make an appointment with Moffit Cancer's Women's Center. And that's how this adventure began a year ago. What a wild ride it has been. Everything changed... Where I live, where I work (ummm, I don'...

. ...In fact, many people don’t realize that not all cancer can be cured. When I explain, people often try to cut me off, telling me not to be negative, as if denying the reality of my disease could somehow protect me. I am an incredibly positive, optimistic person, but wishing won’t make my cancer go away any more than it will make everybody understand what it means to be incurable. So much explaining is exhausting.” — Teva Harrison. Follow her on Twitter and visit Drawing Forward You know what you know. More importantly, you DON'T KNOW WHAT YOU DON'T KNOW. I run into this a lot. The media covers the advances... and I love hearing that there's a pill called Glevix that knocksout GIST. We're making progress.. but there are over 100 types of cancer...I have to be an expert on my type of cancer. Here's what the average person needs to know: * How you can reduce your cancer risk. * Cancer is a simple word covering a lot of conditions. * "Be...

When I say I've got cancer, and someone tells me to have a positive attitude, I'm torn.  I know what they mean.  Don't give up.  Keep fighting.  I know that my quality of life is better if I am focusing on the good in life, avoiding negative emotions, and surrounding myself with happy positive people.  It's easier to be around people who are happy than those who are miserable.  I won't scare off people, so will have a larger pool of volunteers to help. That all makes sense.  But somehow I hear, "You will get better if you have a positive attitude."  Maybe that is true of some cancers.  I am quite envious of all the bouncing boobs out there.  My cancer is special, yep, special and unique just like me.  (that was probably sarcastic.)  A positive attitude won't change the cancer.  How likely am I to die?  Only 14% who have this cancer survive five years after diagnosis. (ULMS with mets to Liver)  My ...

Today I got both chemo meds:  Gemcitabine and Docetaxel.  I thought they'd be administered at the same time.  I should have asked.  Not that it mattered.  Ninety minutes for the Gem and sixty minutes for the Tax.  I did get to knit this time... thanks to Joni in the lab who installed the IV when I got my bloodwork drawn.  I'll ask for her next time.  And the extra hour gave me time to watch Futurama, a Bones re-run (the one with the dead polygamist... but that's another blog...)  and finish (aka run out of yarn) for the gray turban.  (we'll see if it fits or if I need to modify).  I cast on for a black beanie hat in Knitpick stroll black.  It's stash yarn that needs a good light to knit... and the infusion chair is perfect. Plus I like the circulars for the knitting.... rather than the long straight needles.  No side effects, pleasant company (a woman and husband chatting in the next chair.  Overall a good ...

Busy day.  I started with an appointment with my surgeon.  Updated her on the diagnosis.  I'm cleared to go back to work, and the oncologist will supervise my care from now on.  Dropped off the rent check, hit Sonic for some cherry limeade and a foot long hot dog (half price for Groundhog's Day).  Then to Publix to pick up the anti-nausea meds. My original plan was revised several times... Go to work? no..  Go to gym? no.  Ended up taking a nap. This is my first infusion, so I was reading everything so I knew what to do.  The infusion center is an interesting place.  Since patients are "regulars" the staff knows them.  One patient was coughing and spitting into a cup, the orderly quickly got a box of Kleenex for him.  Simple, but thoughtful.  The nurse had problems with my veins... the third stick worked.  Since this has happened before... we talked about a port or a PICC line.  Easier for them, less painful f...

And I know how this works... My department is always open for employees on light duty.  At one point, a maintenance man was on light duty, he was going through chemo for GIST.  The kitchen staff would fix a plate for him for breakfast, since he had meds he had to take with food.  He shared my office, so I could smell the glorious food... and he picked at it.  I know what may be coming. So knowing I'll have food restrictions, what do I eat now? Sunday I had chocolate cake for lunch.  and coffee.... not a vegetable or fruit in sight.  It was glorious.  Sunday night I tried a new sushi place.  All you can eat.. but not the buffet type.  Instead, you order rolls, they fix rolls, and you pay a flat price.  Amazing. I've been reading the rules for eating.  Mostly they are to avoid infection, since chemo is carpet bombing my immune system.  Order drinks without ice, order food without garnishes. I'll need to make a short che...

The PET Scan was interesting.  Back in Indiana, in the dead of winter, I'd go to the tanning bed.  I only went a few times total. But the best part for me was the meditation.  The fan motor whirring, the chance to relax and empty my mind... Quite Zen and relaxing. The PET Scan was like that.  After registration, I was given an injection of stuff... this came in a cute lead container.. even the syringe case had a lead shield.  Then I sat for an hour, waiting for the stuff to circulate and accumulate.  (I'm guessing what it was doing.  I was knitting... ) Then lying face down on the CT imager (big white donut)... I see why they ask if you are claustrophobic.  The room was very cold, but they covered me with blankets. Moffitt is wonderful about giving blankets... even warmed blankets in some departments.  So I lay there just clearing my mind.  After several minutes, they flipped me over, and did the other side.  Then a differe...

My oncologist called yesterday.  She's concerned about something she saw.  She reassures me that she's gathering more information.  Monday's appointment is cancelled, and a PET scan is scheduled for Wednesday, with an appointment with her that afternoon.  She's very good about asking how I am doing.  At this point, I'm intellectualizing, and approaching this as a healthcare professional.  ---I kinda feel like the Doctor on Voyager (from Star Trek). Here's a good explanation of the PET Scan process/ rationale.  <<<PET scan >>> That site is specific for lung cancer, but seems appropriate since we need to know if the "nodules" in the CT scan are from the uterine sarcoma. Specifically there's a 4 cm nodule in the right lower lobe.  Since the PET scan article says "Because lesions larger than 3 cm are almost always malignant,..."  Today is a beautiful day.  -- Well, all Fridays are, aren't they?

Before I met with my friend M, I made an outline of how to break this news.  It seems that the people I'm telling are having a worse time than I am.  They are convinced I'll beat this and cancer is a chronic condition.  Maybe I will.  My outline for telling friends is basically: It's going to be okay. Surgery/path report currently waiting for more info I'll know more on Monday. I don't know what I might need in the future, but can I call you if I need something? Yesterday I told my friend M about the LMS.  We had a wonderful dinner at a nearby Greek restaurant. (Acropolis, Bruce B Downs Blvd, Tampa, if you're curious).  She commented on how good I look (I've lost about 15#, somewhat intentionally) then asked how I was doing.  I dodged that question.  We talked about her new job, her relationships, board games she's played, a visit with her mother... Good conversation.  After the entrées arrived, the conversation lagged...

So I've been chasing statistics.  It helps deal with the unanswered questions.  Today I found this quote: " Uterine leiomyosarcoma (ULMS) is a rare type of uterine sarcoma —a cancerous tumor of the soft tissue of the uterus. According to the American Cancer Society, only about 1,600 out of 52,630 cases of uterine cancer will be uterine sarcomas (a). The National Cancer Institute indicates that uterine leiomyosarcoma makes up around 30% of all uterine sarcomas, which means around 480 women could be diagnosed with ULMS in 2014." from:   Leiomyosarcoma article from Hystersisters.com Okay, I'm one of the 480 (projected figure) who were diagnosed with this in 2014.  Moffitt has a wonderful patient portal.  I've been able to view the CT with contrast scan report from last Thursday.  My appointment with the oncologist is a week from Monday.  I see more testing in my future.  Meanwhile, I picked up the disks from my previous C...

In the first days of this adventure, I found this TED talk. Baba Shiv talks about giving up the driver's seat TED Talk .  With this rare form of cancer, I choose to listen to my oncologist, and follow her directions.  My goal is to live another 10 years.  My roommate challenged that recently.  His sister has battled a variety of cancers for many years.  She's tenacious, intelligent and currently in remission.  Cancer has become a chronic disease for many.  I don't know.  I don't have the data (until the results are reviewed by my physician) from the latest CT with contrast scan.  I've gathered the old CT scans from other facilities and will be taking them to Moffitt next Tuesday.  Then... well, then we'll have a battle plan.  Overall, I'm working on multiple outcomes.  I need to be prepared.  For example, I'm going through my bookshelves and discarding many books.  Why?  I may be moving to a different home....